Strange but true, my story so far...................

[GMAN]

I began having issues after an extraordinary event approx 20 years ago. Whilst installing an outside security light the wiring to the drill overheated and went bang and I nearly fell off the stepladder, a few hours later after having tea I was overcome with stomach ache and diarrhea and spent half an hour on toilet.

This then continued with diarrhea and weight loss for the next year or so until diagnosed with Helicobacter Pylori and a Duodenal Ulcer. This was treated with triple eradication therapy for 7 days, on the final day I woke to find my tongue covered in a growth which the GP said was a yeast which was then treated with more antibiotics.

Unfortunately this did not solve all the issues and I continued with diarrhea until finally being diagnosed as coeliac after a blood test and biopsy. I had never even heard of this condition at the time and was told I had to stick to a gluten free diet.

I have stuck to this diet ever since but have had a few bumps along the way more due to changes in ingredients from the manufacturers than anything else.

Approx 2 ½ years ago (November 2011) started having issues with stomach ache and diarrhea until I realised Tesco had started adding GF Oats to their products and this promptly rectified itself as soon as I stopped eating them.

The following February I started looking at other things in my diet as I occasionally had diarrhea and Heinz tomato soup always gave me a runny nose so stopped having that and managed to put on about half a stone in a month or so.

The following March I started eating roasted, salted peanuts and found these gave me bumpy skin on the top of my arms near the elbows which would be very itchy and turn to dry flaky skin which would be even more itchy in the shower. I thought this was dermatitis herpetiformis so stopped eating the peanuts and hey presto it cleared up.

I have also had a similar experience but this time with Tesco ready salted crisps, I had very dry skin which became cracked on my right hand on the palm and my left ear was the same but it also weeped again when I stopped eating the crisps it all cleared up, could it be a problem with salt ?

I decided that I would have a week of a very limited diet, no bread, no biscuits, no juice, no chocolate nothing but dinner and tea, if I remember correctly I ate Heinz sausage and beans for dinner and breaded chicken and chips for tea for a week along with approx 6 cups of coffee (decaff, white, 2 sugars) and 3 glasses of water per day.

At the end of the week I felt amazing and would wake completely refreshed and alert probably better than I have ever felt, the only down side was I was very hungry. All of my symptoms disappeared, red elbows, pulse in the ear at night when laid on pillow (always right ear), clicking jaw, cracking neck and clicking right knee, also the mucous I wake to every morning on my bottom lip had gone.

On the Sunday I made the mistake of going back to eating normal again including codex bread (I did not know this was not ok) but even though I had been eating this bread for the previous say 5 years or more ( I really can't remeber how long) could I have recovered in just a week if it is that bad ?

I also remeber having a rash on my left arm as soon as I had eaten lunch which I assume was an allergy rash.

I started to have occasional bouts of diarrhea again so out went the bread again and I decided I would get by without it. I needed something for breakfast and decided I would be better off sticking to a recognised GF provider and purchased some Dietary Specials cornflakes and biscuits over the internet, the cornflakes were a little bland although fortified with vits etc. so went for some Asda squeezable honey on top which was rather nice then all of a sudden I had a new sypmtom and began having a constant headache.

I also began to notice that my lips would look a little blue after eating my cornflakes and honey and would get a tingly feeling in them a little time later.

A few weeks later I awoke during the night with a pain in my sternum area which went off when I got up and walked round for a few minutes so thought it must be just indigestion. A couple of days later I brought up some pale green mucous whilst brushing my teeth and then noticed a lump near my rectum which eventually burst with the same colour puss coming from it and then it cleared up.

My next step was to scour the internet for some answers and after reading a few things thought the headaches might be lactose intolerance so tried some coconut milk as a replacement in my coffee but had a pain in the sternum area again all day so poured the rest down the sink.

Thinking I was now lactose intolerant as well as GF I picked up some GF, Lactose free chocolates in Asda, can't remeber the make but they were in a nice gold packet, anyway after having about 5 or 6 I had a sudden pain in my back which lasted for about 10 mins or so.

This was all getting a little too much so paid a visit to the GP for a referal back to the Gastroenterologist who had discharged me a year earlier due to NHS cut backs.

In December 2012 my visit to the Gastro did not go too well as he seemed a little peeved to see me back after being discharged, I told him what had been going on and he said I should be more careful with what I eat as most things are low Gluten and not Gluten Free, also I obviously had Lactose Intolerance. He also arranged for me to see a dietician to discuss my food problems.

I informed him I had not had Lactose Intolerance even before diagnosis of CD and was assured this was only temporary intolerance unless you were of a certain ethnic origin or had hereditary lactose intolerance.

I had also asked my GP to see an allergy speciailist as he thought my sysmptoms could be of an allergy nature, this came through for an appointment in the January, they gave me the rast tests and blood samples were also taken.

The nurse I intially spoke with also happened to be a Coeliac and told me how she had a very simple diet and mentioned that you could tell by your hair and skin being soft when on a GF diet which reminded me of when I had the week off as mentioned earlier and that is how mine felt.

She was surprised I had not had my TTG levels checked and arranged for this to be done.

Results from rast tests showed only slight house dust mite allergy but the big surprise was my TTG test when I went back to see the Allergy specialist was negative 3 !

My first visit to the dietician concluded with being given a Coeliac pack and she decided that i should have a Lactose Intolerance test to make sure.

On my return to see the Gastro he agreed for me to have the Lactose test and also be tested for a SIBO, these tests were done and both came back negative, my Lactose test reached level 3 to which the nurse advised they would have continued with the test even if it had started at that.

My next visit to the Gastro I thought would be very interesting with TTG levels at negative 3 and negative Lacotose test how would he explain that but unfortunately he simply said it was not in his text book and could not tell me what the problem was. The last thing he said was this could be caused by an infection and to ask to see an infections specialist via my GP, again discharged by the Gastro.

After 2 visits to see the infections dept they seemed to solely focus on Tropical Sprue which they said was impossible as I had not spent any time in that region and despite telling them of my problems I was again discharged.

I am at a complete loss as to what is going on and just do not know were to turn next, my GP is quite supportive but none of the ones i've seen have any explanations either.

I would very much appreciate any thougts or ideas or if anyone has had any similar experiences.

[exDancer]

Your long complicated history makes depressing reading and you must be pretty fed up with it all. You seem to be doing the right things and eliminating any foods you suspect may be upsetting your gut, but you can't go on doing this for ever.

You say you were OK with Heinz baked beans and sausage - I read the label years ago and it said Contains Gluten so I've avoided them ever since - have they changed the recipe?

Its often said on here that we get more sensitive the longer we've been on the diet, and this does seem to be the case - sadly it looks as though you are going to have to be more careful because each time you are glutened you're damaging your gut even more and the circle continues.

[GMAN in reply to exDancer]

Hi BBarb

Heinz baked beans and sausage say GF on the tin and I'm not being glutened as such just having strange reactions to things.

If I have GF O's breakfast cereal when I start shaving (electric) my lips go white as if all the moisture has been sucked out.

I've tried Buckwheat porridge from Sainsbury and after a couple of days my partner said I looked grey !

I have always been very careful hence the TTG level negative 3

[Hidden]

Hi GMAN, have you come across fructose intolerance? it is often confused with IBS and honey is high in fructose so that's well worth checking out.

In my opinion many coeliac seem to be very sensitive to other things, it's like we have a twitchy immune system. I also think that you could benefit from seeing a nutritionist and start off with a bland but balanced diet and introduce new foods and keep a food diary to monitor your reaction.

I also think that you could sharpen your act up when it comes to what food you eat. So buy a saucepan and boil up some vegetables and realise how easy it is to make food from scratch. This is none of my business just an honest comment and is meant to make you think about this side of your life and something that just may be, would help you feel much much better.

[GMAN in reply to Hidden]

Hi Jerry

Thanks for your reply

I asked the Gastro about the fructose problems and he dismissed it since then I have asked my GP for the test in January and after 4 weeks the surgery called to ask me to arrange it with Immunology at my next appointment which they keep cancelling due to unforseen circumstances. Hopefully they won't cancel my next one and I can get this done.

I eat all my Veg's like a good lad even the ones I don't like ie sprouts, the issue does seem to be Lactose and Fructose even though the Lactose Intolerance Test was negative and my TTG level was negative 3.

The foodstuffs mentioned are either breakfast cereals or snacks as I only have time for cereals or toast in the morning before work.

I was hoping someone may have come across something that can cause lactose problem but with a negative test as the Gastro said infections can cause this.

[Penel in reply to GMAN]

Apologies for having lectured you on eating veg!

[Hidden in reply to Penel]

Me too!

[Penel]

Hi Gman

Sorry to hear you've been having a tough time.

I think it is possible that Jerry may have a point about food. You may have been eating gluten free products, but they are not very nutritious. Are you able to eat vegetables and fruit? Your body needs a variety of vitamins and minerals to function healthily and fight off infections. These are most effectively obtained from fresh food, otherwise you may need supplements. You also need some natural fat in your diet, to make sure that fat soluble vitamin like Vit D can be stored and transported. Lack of fat will leave you feeling hungry.

Although your antibiotic treatment was some time ago it can have a long lasting effect on your guts and a course of probiotics might help to make sure you have a healthy gut and are able to absorb nutrients. It might be a good idea to take the simple carbs (like breakfast cereal) out of your diet, as your body does not seem to like them! Also a good idea to cut out the sugar to make sure you do not encourage any more yeast infections. Perhaps have eggs for breakfast?

Good luck with sorting out your problems. Perhaps have a look at some Paleo websites for discussions on different food choices.

[Lexy]

One small comment re the yeast on your tongue - sounds to me like it could be candida? Treatment with antibiotics is unfortunately not generally recommended (although doctors often do this). Someone else mentioned probiotics and if you can tolerate them it may be worth a try. And also, as previously suggested, consider the paleo diet or aspects of it that suit you. It may help to level things out and allow you to better understand what your triggers are? Personally I avoid processed foods, and especially foods sold as 'gluten free' as not only are they usually just 'low gluten' (ie not at all gluten-free) but also full of other crazy things, especially all sorts of sugars (massive trigger for me). Good luck!

[sallydogsmum]

Hi

I think you've actually answered your own question. You felt so much better when you had a simple 'clean' diet, eliminating problem causing issues. Perhaps you could go back to basics and try that diet again, but give yourself more to eat. Many people can't tolerate the ready made GF foods, as they are LOW gluten and not gluten free.

I do wonder if you have a problem with foods from the nightshade family: you mentioned tomato soup and crisps causing tummy upsets. You could cut them out. I did a few months ago as I couldn't understand why I was continuing to be unwell but following a very strict GF diet. It's also cleared up a rash I've had on my back for years, though it may be coincidental. Perhaps you need to look at glucose-fructose syrup as it causes issues too (yes, you've guessed it, I had trouble too ;)). Removing these two as well as gluten has made all the difference!!!!

For some coeliacs, the issue becomes more than just removing the gluten, it extends to lactose, fructose, glucose, formaldehyde, corn, nightshades, alcohol.......... and this leads us to the Paleo diet which eliminates all of these (I think)..........

You can buy/download the 'bible' about Paleo by Sarah Ballatyne (be warned it's very long and very in depth).

Good luck.

PS. You might want to think about probiotics to help settle the bacteria in your guts, especially as you've had antibiotic treatment which kills the normal flora in your gut.

[Thurgolady]

Hi Gman

Just some of my thoughts which I hope may help you figure this out: the tingly lip 'thing' is a sign of 'true' allergy so could be something else that you are allergic to as others have suggested.

I wonder if you could have an intolerance to corn? some people cannot tolerate any grains and I would advise having a look at a site called Truly Gluten Free.co.uk which is very good and I think may help you find the answer to your issues. I seem to react to things that are supposed to be ok like quinoa so I avoid it and I keep corn and prepared gluten free products to a minimum. If you have a diet high in prepared gluten free products then your intake of gluten may be too high for you to tolerate - as others have said they are low gluten not free from gluten so it adds up!

I am not sure about the dates of things in your post but I wonder if you could have an allergy to the antibiotics?

As I think you have been gluten free for a long time Im presuming that you are good at checking labels and havent been glutened by accident? I dont know about Tesco crisps but a lot of crisps are not gluten free - including Walkers! Different brands of salted peanuts may or may not contain gluten but Ive not found any of the roast type that are gluten free. If Im wrong and you havent been gluten free for a long while then your symptoms may not be due to what you have eaten recently but are sort of lingering effects that hopefully will go eventually.

I agree with the poster above about taking probiotics and get a very high dose one if you can afford it.

Another thing to look into is histamine intolerance - this can account for some seemingly random intolerances.

Gill

[LHine]

In your unfortunate position, I would research the FODMAP diet. It is an extreme elimination diet, but not intended as a permanent thing. You do it for 8 weeks then re-introduce foods one at a time. It may not be relevant, but I'd say worth a look. Best of luck.